It has been said there are four stages, but because there is so little research they are a guideline only.
Many people experience some stage four symptoms at stage one or overlap stages. Some never experience certain symptoms and then others can experience ones not listed. The impact it has on each individual varies dramatically.
Progressive Supranuclear Palsy (PSP) is a rare neurodegenerative disorder that affects movement, balance, vision, speech, and cognitive function. The disease progresses slowly over time, and its symptoms typically become more severe as the disease advances. While not everyone with PSP experiences the same symptoms or progression, there are generally four recognized stages of PSP:
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Early stage: In the early stage of PSP, individuals may experience symptoms such as difficulty with balance and coordination, changes in gait, and problems with eye movement. These symptoms may be subtle and easily dismissed as normal aging or a different condition.
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Mid-stage: In the mid-stage of PSP, symptoms become more pronounced and can include falls, speech and swallowing difficulties, and cognitive impairment such as problems with memory and executive function. Depression and apathy are also common.
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Advanced stage: In the advanced stage of PSP, individuals may become wheelchair-bound and require assistance with daily activities such as eating, dressing, and bathing. Symptoms such as rigidity, spasticity, and involuntary movements become more severe.
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End-of-life stage: In the end-of-life stage of PSP, individuals may be bedridden and require around-the-clock care. They may have difficulty swallowing, become more susceptible to infections, and experience other complications related to the progression of the disease.
It's important to note that not everyone with PSP will experience all of these stages, and the progression of the disease can vary widely from person to person. Additionally, some individuals may experience rapid progression, while others may experience a slower course of the disease.
Here is the four stages below in more detail;
Early stage:
May present via the fracture clinic, falls services, eye specialist or speech and language therapist. The early stage typically spans years 0-1.
> Ambulant.
> Occasional falls.
> Unsteadiness and poor balance.
> Possible visual problems affecting ability to read.
> Voice changes, for example reduced volume.
> Mood changes.
> Reduced socializing.
> Changes in mood and behavior, including apathy and anxiety.
Mid stage:
Many people reach this stage before diagnosis. Consider discussing advance care planning and advance decisions to refuse treatment. Consider referral to palliative care services. The mid stage typically spans years 2-3.
> Ambulant with aids.
> High risk of falls and injury.
> Visual problems affecting self-care abilities, for example eating and walking as unable to move eyes to see.
> Speech increasingly unintelligible.
> Inability to initiate conversation.
> Impulsivity (risky or impulsive behavior).
> Apathy.
> Dysphagia.
> High level of supervision required.
> Increasingly socially withdrawn.
Advanced stage:
Patients should be on GP palliative care register and have access to specialist palliative care.
The advanced stage typically spans years 3-6.
> Mobility significantly compromised, probably chair bound requiring a wheelchair for mobility.
> Significant visual problems.
> Significant muscle stiffness.
> Significant communication problems, but probably still able to understand.
> High risk of aspiration and pneumonia as a result of dysphagia.
> Pain.
> Increasing periods of sleepiness.
> Incontinence.
> Severely withdrawn socially.
> Dependent for most or all aspects of care.
End of life stage:
This stage is difficult to detect, but may be indicated by reduced levels of consciousness, inability to eat or drink, acute infection, a fall or major fracture, and rapid and significant weight loss. The end of life stage typically spans 6-8 weeks.
> Severe impairments and disabilities.
> Rapid and marked deterioration in condition.
> Decisions with regard to treatment interventions may be required, considering an individual’s previously expressed wishes (advance decisions to refuse treatment).
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119 comments
My dad is 80 y/o and he is at entering his last stage of PSP when he was diagnosed in 2016/2017.
Drifting in and out of sleep.
He lost alot of weigh and is very weak now. He can’t communicate and swallow well. When he is slightly alert, we will try to test memory or ask him how he is feeling. We can only try very hard to wait for his reply through lip reading or right hand signal of OK or not OK. I asked him what was he thinking last week, he said “fear” with a sudden burst of tears. It breaks my heart to see him going through this. Nevertheless, as caregiver we must be strong to be with them. I am thankful that have a good helper to take care of him. We have home nursing support which ease us from admitting him in and out of hospital.
My 58 year old son has been followed by neurologist, thinking either frontal live dementia or PSP
From what i am reading seems more like PSP, his voice is quiet, balance off etc
He is on levadopa but dont see improvement
My father is entering the last stages, currently in the hospital with sepsis, chronic anemia, a kidney infection, and his body twisting into the most uncomfortable positions. He is also a retired physician and all too aware what is happening to him. Arranging care has been difficult through stages 2 and 3. Harder still, now that we are suddenly and firmly in 4, we are seeing him suffer through moments of paranoia and hallucinations. I understand that these symptoms are more common with Parkinson’s, but we are seeing it with PSP and it is heartbreaking.
PSP and Parkinson’s have similar symptoms but are not otherwise related. My wife has psp where early symptoms were gross imbalance. We also noted a flicker in her left eye when focusing intently on something. The neurologist who finally diagnosed also noted that in her right eye but less noticeable. All of the other symptoms spoken of here have been hers as well. Do some memory lanes talking with these loved ones and let them know of the blessing they brought into your life and how valued they are because of that! When asking questions about foods, for example, don’t give a list and ask which one. One at a time, ask yes or no and coach the a nod or head shake will be OK. Short term memory is gone, like parkinsons so they can’t handle a list. That is a backhanded blessing for them because something bad that happened yesterday is not remembered today! Be positive!
My mother in law is 67 at present and is suffering from PSP for last 4 years. She today is admitted to Hospital due to breathing difficulty and Doctors decided to keep her on ventilator as her oxygen is 45 percent instead of 95 or above. Doctors said that she has infection in her lungs and needed antibiotic. Just wondering if anyone experienced the same and open to guidance on what to expect. Thank you all